John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind. Holman’s account is unprecedented in autism journalism. More than a simple, factual record, it is an artistic statement – one autistic interior on display. The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism. This world is rarely communicated to an audience. Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination. This is journalism in technicolor.

Alex was growing frustrated. “The lighting in here is awful! I can’t work with this! And why are all these people so noisy? Can’t they see we’re filming?!”

It isn’t easy to be an obsessive autistic. Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.

“What are they doing that is so important?!” Alex fumed. “We’re making a movie! Who invited all these people?”

“Um, those are the developers,” I said. “I think they are kind of important.”

Andy Shih sat before us, quietly observing our executive dysfunction.

“I have an idea!” I declared, climbing onto a nearby table. I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips. “QUIET ON THE SET!” I bellowed. My library voice can be heard by anyone within a mile radius. You can imagine the thunderous volume of my announcement.

The room fell silent. I hopped down from the table, quite pleased with myself. “I’ve always wanted to say that!”

I took a seat before the camera, excited to begin the interview.

“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.

“Closer…” Alex said.

“Closer?! You want me to sit in his lap?”

“Please don’t…” Shih stammered.

I had never conducted an onscreen interview. I felt like the dude from Inside the Actor’s Studio! I waited for Alex’s cue.

“Alright, make it happen guys! One… two… three… action!”

My first interview went rather well – I barely interrupted at all. The footage will be available when Alex wraps up post-production. Alright, Plank, stop reading this article – you’ve got a movie to edit!

I thanked Shih and wandered off to abduct someone important for our next interview. Luckily, I was distracted by a group discussion in the dining area. Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat. “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said. “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned. “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed. “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars. This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“Do I get to be in the movie?” Marc asked.

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes. We’re all learning. Autism was poorly understood when I was a kid. I lived 24 years without a diagnosis. Awareness is spreading. It is only natural to see more people being diagnosed. We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone? Mark? Bueller…? Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all. The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope. More importantly, they are willing to pay for it. We may never find a cure, but there is no telling what will be discovered along the way. Knowledge is a powerful asset. I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights. I realized, quite suddenly, that precedents were being broken all around me. For far too long, the autistic community has been relegated to either side of a massive, ideological divide. In that moment, we were unknowingly constructing a bridge. This was truly an unlikely meeting of minds, and a rare dialogue.

Progress depends on the cooperation of many. Communication is the first step.

I thought of Kat. “Has anyone seen my girlfriend?”

I found Kat doing homework in a corner of the lobby. Her frustration was evident.

“You want to come get some more pictures?” I asked.

“I got some already,” she said, without looking up.

“Well, we could always use more.” I was trying my best to include her.

“I’m studying.”

“Kat, what’s wrong?”

She sighed and closed her book. “You know,” she said, “you’re a lot like Alex. I guess I never truly realized…”

“Realized what?”

“Never mind,” she said, reopening her book.

I stood awkwardly for a long, silent moment. “Oh, there’s Phil,” I said. “We have to interview Phil!”

It seemed the day would never end, and I didn’t want it to. I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…

I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever. I knew I would wake up soon enough. Like Cinderella, I was afraid to enjoy an expiring spell. The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.

I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.

I ran into Marc, who told me the development teams had completed their applications. “Have you seen Kat?” I asked.

“Didn’t she tell you? She walked back to the hotel.”

I followed the crowd into the conference room and slumped into a chair. The developers presented their applications, brilliant technological tools which would enable communication for countless autistics. I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown. One developer presented a bonus application, which he had created on his own while the rest of his team worked together. That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.

I sat on the edge of Alex’s bed. “You feeling alright?” he asked.

“People come and go,” I said. “At first they like me. They want to help me. After awhile they realize that I’m not going to change. They get angry… then they leave.”

“I’m glad you’re my friend,” he said.

“Thanks, Alex. I’m glad you’re my friend too.”

What else could be said? It had been a long day.

The San Francisco airport was nightmarishly crowded. The line through security seemed to stretch on forever. “Kat, I really don’t like lines. I’m going to tell them that I’m autistic so we can go through the short line.”

“You’re going to play the autism card just because you’re impatient?” Kat scoffed. “No one here likes lines any more than you do.”

Ashamed, I followed Kat to the end of a massive, slow moving crowd. “This isn’t so bad,” I said, attempting to be cheerful. But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me. I began shaking my legs and flapping my hands.

“Stop it!” Kat hissed. “You’re embarrassing me.”

“Sorry… I just… I really don’t like lines.” I could feel the sweat on my forehead. I couldn’t breathe.

I was on the verge of a meltdown by the time we reached security. Kat went first, making it effortlessly to the other side. I was alone.

I didn’t speak to Kat until we had boarded the plane. We found our seats, and I regained my composure. Finally, I turned to her. “Kat?”

“Yeah.”

“A relationship, I think, is like a shark. You know? It has to constantly move forward or it dies. And I think what we got on our hands is a dead shark.”

“That is a quote from the movie Annie Hall,” Kat said. The disdain in her voice made me shudder.

“It is…?”

“You know it is. It’s from the scene where Alvy and Annie break up on the flight back from California. Are you using stolen Woody Allen material to break up with me?”

“No, I’m not trying to break up with you. I just don’t know what to say. I’ve never fought with a girl on a flight back from California.”

“Life isn’t a movie!”

The plane’s air conditioner was on the fritz. The heat was oppressive. Passengers were fanning themselves with barf bags. “This must be what the Amazon feels like,” I muttered. I caught sight of a stern looking stewardess several rows ahead of me. “I WANT MY MONEY BACK!” I shouted towards her.

Giggles erupted throughout the plane. “You’re not nearly as funny as you think you are,” Kat scowled. “Stop embarrassing me.”

Now I was mad. I cleared my throat, and began singing at the top of my lungs, “I’m dreaming of white Christmas…”

The passengers howled with laughter. “I hope you’re happy,” Kat said.

“One of us has to be, at least once in awhile.”

“You said you were afraid of living in a world that didn’t include me, but you never did! You’re too wrapped up in your own world!”

“That isn’t fair. I warned you about this. I tried to make you understand.”

“Oh, so now it’s my fault? I didn’t research autism enough? I wear a puzzle piece around my neck every day!”

Kat was crying now. I knew that I should comfort her, but I was too angry.

“No, you did plenty of research,” I said, sarcastically. “You put on a necklace and now you understand me!”

Kat’s face went blank. I couldn’t read the emotion in her eyes. Was she sad? Angry? Scared? Her hands trembled as she ripped off the necklace and threw it to the floor. I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.

My parents drove me to the emergency room. Kat had left me at the airport. My typically inaccessible emotions had built up over the trip. They came erupting to the surface, all at once, in a meltdown to end all meltdowns.

I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily. I was finally sedated.

“I’m not going to leave you,” she said. “I’m never going to leave you.”

“But Kat left me.”

“I’m sure she had her reasons,” my mother assured me. “Relationships are tough. She is young and confused. She didn’t mean to hurt you.”

I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”

Kat was right, life isn’t a movie. It doesn’t always follow the script you’ve written in your head.

Life is difficult… but love is worth it. I know that I am loved, and that I love in return. I may have difficulty communicating my feelings, but I feel deeply nevertheless. I have learned that no matter how irrational our emotions may be, they are always valid. We must understand if we are to love, and we must communicate if we are to understand.

In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum. ‎”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”

I love who I am, and I will keep following the music. I may be marching to the beat of my own tone deaf drummer, but the music makes me happy. Perhaps, one day, I will find the words to share this music with someone else.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

(((HUGS))) for you John Scott Holman! I’m sure this is what my son would say, if only he could! He talks, sometimes almost incessantly about cars and sports and oh-a-million-and-one things…and he has so many facts in his head and he wants nothing more than a special young lady to love…and yet he hasn’t a clue how to even attempt a relationship (even after finishing the entire “Dating for Dummies” book that he spent his Christmas money on two years ago thinking that once he finished it he’d have a magical entrance into the world of dating.) *sigh* But he’s come so far from the mute little boy of six who would only point and I will not give up on him nor allow him to give up on himself! Thank you for your posts, I’m so glad I found them because it gives me the courage to keep up the fight! :)

Scotty, I am so sorry for your loss. Thank you very much for showing us who you are, what you feel, how you think. It helps me as a mom of a 20 year old Aspie. He is very similar to you with relationships. Thank God for mothers who love their children. Your mother will be there for you always. It’s not the same as having your own woman (or man) to love and love you back. And yet it’s good to have her there. I pray you find that someone one day. Keep writing and thank you.

This made me so sad. I have an autistic child and my husband is on the spectrum as well. Take heart about finding someone who will accept you with all of your quirks. It took a long time for me to realize my husband wasn’t just being mean or hateful with some of his comments to me. I’ve learned to read between the line so to speak. He’s not very affectionate, and he is definitely not good at talking about feelings, but he comes home to me every night and provides for his family. He will do most things I ask of him and we rarely ever argue about anything. I’ve learned to accept his unemotional answers to my questions and with help he is learning better ways to express anger when he feels it which isn’t as often as most “normal” men. Your story touched my heart as I have fears about what my son will face in life. He is 12 years old now and is doing very well, but like his father isn’t very affectionate and has no idea how to express what he’s feeling in words yet. We arwe working on it and despite the sadness of your story, it also gave me hope that my son can be as productive in the world as you are. God Bless.

I hope no one reading this article thinks Kat is a bad person. She is a good person. She attempted to make the best of a difficult situation. She was overwhelmed. I’m sure the parents here can understand.

Your mother with you in the ER is disturbing, to say the least. For God’s sake you are a grown man!! You sound exactly like my exhusband and his parents….the complete enablers they are. My exhusband called 911 and the police department removed him from our home when he was having a “meltdown”…..The police were about to put him in handcuffs when his father arrived and took him away to a “safe place” (the ER). It wasn’t the first time, nor the last. I have very little empathy for adults that are enabled by their parents….and I am the mother of two adult children with aspergers. You are a talented writer, no doubt, but you have the emotional maturity level of a five year old and you can give your parents credit for that.

starling99@wydebeam.com :
Your mother with you in the ER is disturbing, to say the least. For God’s sake you are a grown man!! You sound exactly like my exhusband and his parents….the complete enablers they are. My exhusband called 911 and the police department removed him from our home when he was having a “meltdown”…..The police were about to put him in handcuffs when his father arrived and took him away to a “safe place” (the ER). It wasn’t the first time, nor the last. I have very little empathy for adults that are enabled by their parents….and I am the mother of two adult children with aspergers. You are a talented writer, no doubt, but you have the emotional maturity level of a five year old and you can give your parents credit for that.

On Internet forums, this and your previous posts would be referred to as “trolling.”

If you are not just trying to get a rise out of people, I feel very sorry for you. You seem very bitter and hurt, and I can only hope that you find happiness in the future.

John, I can relate so much to what you write even though my condition is different. I have schizophrenia with severe social anxiety, and I rarely take my medication as it leaves me feeling dead inside. I’m aware of my condition, and have learned to ignore most of my symptoms. (or at least tolerate and identify when I am having symptoms. Mainly, I experience some auditory hallucinations from time to time, and I can become extremely obsessive at a task/subject.) My social anxiety has left me without many of the tools ‘normal’ people use to communicate, and therefore I know I lack the ability to understand and relate to many other peoples feelings (maybe part of the schizophrenia? lol).

Reading this series of articles has really been an eye opener for me. To learn that there are others who, although maybe for different reasons, experience life in a similar way is uplifting. You don’t feel so alone in your own little world anymore knowing there are others you can reach out to and relate with. I’ve shared your article with my friends (especially my friends with autism), and I hope that you can inspire them as well as I know they have some hard down days from time to time feeling isolated.

Kat sounds like she was a wonderful person trying to work through a difficult situation. I mean no offense by that as I know my own partner struggles from time to time with me and my conditions. A social anxious schizophrenic who’s all jittery in public striking up a conversation with nobody would embarrass, and I”m sure frighten, the best of us (although, she’s learned after 9 years to laugh it off haha, you have to I guess.) But; I know she struggles when I become obsessive. I put up some sort of mental barrier. They can last for days, or months; and it’s hard for a partner to not have support returned to them while still giving it themselves. I honestly feel I could not live with someone like myself, which just affirms how amazing a partner I am with. It’s no slight to Kat that the relationship didn’t work out, and honestly it’s a testament to her for taking on the responsibility and trying. It speaks quite a bit for her character. It sounds like she just, as you said, became overwhelmed.

I guess the point to this extremely long, and unsolicited ramble (I’m sorry by the way :\) is to not loose hope. There is someone out there for you :) Different people want different things from relationships, and Kat wanted something you can not give. That’s okay. That’s why people date :) You’ll find someone who wants, and loves you for what you can give to them; and that’s when you’ll know your with the right person. :D

Keep getting back up and trying :) Your an inspiring writer, and extremely entertaining as well. I hope all works out well for you. Again sorry for such a long post, feel free to delete it if it’s a bit rude :\.

Thank you very much! I’m afraid Kat thought she came off rather badly in this article, but I tried my hardest to be fair and balanced (being autistic, this takes extraordinary effort). I did not want to present her as a bad person or a mean person. I commend her for trying to make our relationship work. Anyone who wishes to have a a relationship with someone on the spectrum must be willing to give up a great deal of their lives. Kat is a brilliant girl who will do amazing things for the world. Unfortunatetly, she has too much potential to devote so much of her time to a spectrum relationship.

My concern with this post is the author has admitted that this is gonzo journalism. He fictionalized much of the story if not all. The commenters have not picked up on the fact this story is not true. It is a compelling, well written fictitious example of autism. I find the authors responses to be indicating otherwise and am confused by this entire matter.

This story is MY perspective on events which very much took place. None of it is completely fictional and none of it is completely factual. Objectivity is unattainable. There is much which is summarized and filtered through my individual perspective, as the introduction indicates.

This is not a fictional account. Neither is it simple, factual recording. It is the events as I see them and remember them, which is all any form of journalism ever actually is. Gonzo journalism is merely a highly self-aware form of recording, in which the author’s personality is injected into the story.

The unique quality of this piece was emphasized in the introduction. This writing style is not unheard of and has a long tradition in literature, particularly in autobiographical accounts. I highly doubt that John Elder Robison followed all his family members and friends around with a tape recorder throughout his life expecting to one day write a book about them.

If you are still confused by this, I have a little challenge for you. Think back to an important event in your life. If you are married, your wedding day would work nicely.

Now, sit down and try to write a COMPLETELY factual and detailed account of this day, using dialogue and descriptive language. This is your wedding day, so you must make it very personal, but 100% factual. None of the dialogue may be paraphrased or the events summarized. All details must be included, and it must be under 1,000 words.

It must be compelling and entertaining, with cohesive thematic elements, exposition, conversation, and a solid opening and finale.

It must, however, be completely and utterly factual. Everyone must be accurately represented; you must capture their exact body language, words, emotional reactions, etc…

You cannot simply record what you see on a home video, but include all the exciting, behind-the-scenes details – but they MUST be a completely accurate record of true events, made compelling by the inclusion of your personal perspective.

I know for a fact that the article is true as I had heard comments of Scott’s time there. I even knew what to expect in the article so it’s not just out of his imagination. Scotty has influenced my own writing because I can involuntarily mimic writing style. It’s one of my more positive autistic traits.
Check my blog about my first 10 years and see if it’s a work of fiction. I’m delivering the story in an entertaining way but that’s the way everything happened.

Scott admitted that it was fictionalized and made up. He admits it is gonzo journalism. He doesn’t claim this to be true. I am not going to share what he said on Facebook but he admitted that he fictionalized the conversation. All we can do is tell the truth as we know it. But he admitted he didn’t tell the truth as he knew it that it was “fictionalized.” we’re you with him on the plane? Do you know that is what happened?

He says one thing on Facebook and another here. If it is gonzo journalism, fine. There is merit in that style but it helps the reader to know it is that style. I know 3 people mentioned in this article who are irate and say the whole thing was made up. Read it. Share it. But know it for what it is- gonzo journalism as he says it is. Gonzo journalism doesn’t care about the truth as much as telling a cool story loosely based on the truth. I am fine with that, I just think for commenters to make judgements on any person mentioned above is unfair.

I know of no one mentioned in this article who is irate. Kat was, of course, upset by the whole situation.

None of this was “made up.” I admitted that it was “fictionalized.” That much is true. If you find fault in this style, please respond to my challenge above.

I speak to Alex, Steve, Marc and Peter fairly regularly, and have had correspondence with each of them since this article was posted. They are my friends. I care about them and would not intentionally do anything to hurt them. If they were unintentionally hurt, I believe they would call me up and discuss it with me.

I thought you were ready to let this go? If you are trying to prove that I have not managed to paint a completely accurate picture, then you should know that I agree with you. However, I would like to see your response to my challenge. If you can demonstrate that complete accuracy and objectivity in personal journalism is a possibilty, I will be very impressed.

‎”Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a story told in three parts, and three layers. On the surface, it describes Hacking Autism’s goal to use technology to facilitate communication for autistics. Look closer, and you will find a deeply personal account, which reveals the communication breakdown at the very heart of the human condition. It is also a political satire, which sheds humorous light on yet another communication failure, which has separated the autism community to either side of an idealogical divide.

> None of this was “made up.” I admitted that it was “fictionalized.” That much is true.

Well, Scott, I’m not surprised if some readers find this distinction a little hard to figure out. Yes, the general events described — with great wit and humor, for the most part — in this series occurred. But it’s also clear that you invented dialogue and put it in our mouths. Some of this concocted dialogue tracks the words I remember hearing that day fairly accurately; but some of it is clearly fiction, i.e., “made up,” to make a point that you wanted to make. In a couple of cases in this series, you agreed to change particular wording on the blog when it was clear that people quoted (including me in one case) were unhappy with the fictional words you put in our mouths. That was the ethical thing to do, and I’m very glad and thankful that you did it. But I think you’re muddying the waters a bit to suggest that the issues here fall under postmodern reappraisals of the possibility of truth and accuracy in journalism in general. This blog is only journalism in the gonzo sense, and that’s only obvious if you’re familiar with the concept. Until everyone GETS that a column by John Scott Holman is apt to so blur the lines between truth and fiction that readers can’t rely on any phrase in it being accurate to a world external to John Scott Holman, most readers will assume that if you quote a real person identified by their real name, you’re probably — at least KINDA — reporting what they said. In a book of your own, that won’t be a problem, just like nobody assumes that Tom Wolfe’s “The Electric Kool-Aid Acid Test” was a straightforward journalistic account of events. But that’s a very new THANG for an Autism Speaks blog. It’s cool, but at least at first, you should try to be humble and as non-defensive as possible when this confusion comes up.

As I indicated in the article itself, our actual conversation was far more involved. I chose only to emphasize the points which I did, in fact, make. I framed the discussion as a one-sided Aspie monologue prompted by you, Peter, and Marc in order to avoid quoting (and no doubt misquoting) the participants and broadcasting their actual opinions.

I truly am sorry if anyone seemed less involved in the conversation than they actually were. The dialogue in question is central to the underlying political theme. Autism politics often result in incessant flame wars, and I myself have been heavily attacked. I wanted to give highlights of the conversation, yet keep all participants but myself completely neutral. I did not mean to depict anyone as unimportant. Everyone had intensely interesting and valuable things to say.

As for being defensive… well, you’ll have to excuse my tendency to perseverate. I only wanted to clarify the nature of the piece and put an end to any confusion. I will give you a call soon bud!